Blog Post
America’s health data system, vital for showing how income, race, and community affect our health, is falling apart just when we need it most. The backbone of our system is the government-run National Center for Health Statistics (NCHS), which researchers use to connect information from many government data sources, including health surveys, censuses, and medical records, to consider everything from health outcomes to social determinants of health.
But our health data infrastructure is now weakened by funding cuts, missing information, and growing public distrust.
The Trump administration has slashed personnel and funding for key data collection efforts and demanded that federally funded data sources erase sociodemographic indicators like gender identity. The administration has also stopped federal funding of minority health and health disparities research and launched a plan to share data in violation of Health Insurance Portability and Accountability Act (HIPAA). At the same time, the Department of Government Efficiency (DOGE) has treated residents’ personal information in ways that could be illegal.
By contrast, some European countries run government-linked health databases that seamlessly link health information from many sources and make these data available to a wide range of interested parties.
Here are six things that the U.S. can learn from foreign countries about data linkage that could help improve our damaged health data system:
Data linkage systems that miss key information about social or economic status, race, ethnicity, gender identity, sexual orientation, or disability status cannot meet the needs of researchers and policymakers who want to learn about health inequalities, and are likely to be underused.
Particularly when trust in government is low, people may be unwilling to provide sensitive personal information such as gender identity or ethnicity during routine interactions with state agencies. But they may be willing to share this information in an anonymous survey context. Building secure mechanisms for linking survey and administrative data about individuals, as Sweden has done, can allow for privacy while still helping researchers get the information needed to assess and address health inequalities.
The U.S. should follow Europe’s lead and implement general data protection legislation that applies to both public and private entities. Existing U.S. data privacy law is not designed for the current era, in which both well-meaning and rogue actors can connect large amounts of personal data and use them in potentially harmful ways. The U.S. needs to update its privacy laws to allow for linking data across selected government agencies while providing robust protection against misuse.
Some individuals will want to opt out of having their personal data used for research, and should be allowed to do so. But policy makers in the UK have found that building robust public consultation into the process of developing data linkages can foster trust and reduce opt-out rates.
At a time when public trust in government is low, restricting access to linked data is tempting. Generating political support for linkage systems that are open to all comers (provided they can show that the data will be safeguarded), as Sweden has done, is likely to be impossible in the U.S. at the moment. But data linkage systems must be opened up eventually for public use: linkage systems that can only be used by a tight inner circle will be under-used, as the French experience shows.
Reducing barriers to using linked health data is key to building equitable solutions. Even before the actions of the current administration, researchers at smaller institutions, community organizations, or under-resourced local and state government and health care settings faced substantial costs and barriers to accessing linked health data in the U.S. To be viable, research topics had to align with major funding initiatives, marginalizing topics relevant to groups without strong institutional representation. The U.K. and France, on the other hand, provide access to pre-linked, de-identified data at no cost. The U.K. additionally provides training in how to use the data at minimal cost to users.
The article, “The DOGE Ate My Data: Lessons from Europe for Rebuilding the Health Data Linkage Infrastructure in the U.S. after Trump,” was published in the Journal of Health Policy and Law on October 8, 2025 by Julia Lynch and Michael Tu.
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